Jordan’s Story

Site created on June 27, 2013

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Our JM Story

There are so many moments that (as I look back now) gave me
a clue that something was wrong.  But,
when your child is active and happy, how could he possibly be sick?  What started the ball moving was a strange
rash on his elbows.  Yes, that’s it…just
a rash!  I remember thinking these boys
get themselves into everything; he probably rolled in the grass somewhere and
is just allergic to something.  Then, the
rash continued and now looked almost like warts.  So then I thought, ugh…warts again, this
won’t be fun.  I even consulted with my
best friend (a teacher) and asked if she had seen children with this type of rash
before.  She had no clue.  Then, Jordan developed some enormously huge
sores in his mouth and I knew it was time to go see the pediatrician. 

My three boys all have the same pediatrician whom I’ve
trusted since birth.  He is an elderly
man and a great physician.  He took a
look at the rash and the mouth sores and looked puzzled.  I wasn’t overly concerned because this was
actually not the first time that Jordan had puzzled a doctor with his
symptoms.  In fact, it wasn’t even the 2nd
time that I had seen this same look on a doctor’s face.  He believed it was a virus called “Hand, Foot
and Mouth Disease”, and to give it a week to see if it would clear up.  A week later we were back at his office.

Now the rash was also on his knees.  The doctor asked if I wouldn’t mind if he
brought in another doctor to look at the rash, again, another puzzled
look.  He recommended we go see a Dermatologist.  A few days later and minutes after being seen
by the Dermatologist, he was diagnosed with Eczema.  I was furious!  Something in my gut was telling me they were
wrong, but who was I to argue with a doctor? 
The steroid cream he was given did help improve the rash, but it wasn’t
going away.  A few days later Jordan
tells me that he thinks he jammed his finger. 
As I look at his swollen finger, somewhat angry, I tell him to please be
more careful playing basketball.  But, as
I continue to look…I am somewhat horrified…almost all his fingers were
swollen!  We rush back to the
Dermatologist thinking maybe it was an allergic reaction to the cream, but she
quickly recommends we see a Rheumatologist.

Now the research begins. 
First, the search to find a Pediatric Rheumatologist, I chose the one
listed at Miami Children’s Hospital because I had a feeling that I would need a
doctor associated with a great medical hospital.  I was convinced that his swollen fingers were
related to the rash and both Dad and I begin scouring the internet.  Dad finds a picture of what resembles
Jordan’s rash and I continue to do more research as we wait for our appointment
date.  After many hours of reading, I am
horrified at what I believe may be wrong with Jordan. 

The specifics of the appointment with the Rheumatologist are
all a blur to me.  My heart was racing
from the moment we arrived and my heart stopped when the doctor said he
believed it to be JDM.  It was one of the
diseases listed (in my mind) of what I thought Jordan may have.  He wrote the name out for me on a piece of
paper and handed it to me and said, please do some research and then ask
questions, this is serious and we need to do several tests ASAP.  I did everything in my power to keep from
crying.  I knew it was serious; I had
already done my research.

The journey was just beginning.

What is JDM?






Juvenile Myositis is an orphan autoimmune disease affecting only about 2-3
children out of a million.  The disease can be debilitating and
life-threatening by causing muscle weakness and pain, extreme fatigue,
digestive difficulties, lung and heart problems, painful calcium deposits under
the skin and a host of other side effects.  While some children will
experience a remission, other will suffer Juvenile Myositis’ destructive
effects their entire lives.  Some children will even die from
complications of the disease.

There is no cure for Juvenile Myositis and little funding for it. My hope is
that we can change this through more research and awareness.  That is why
I am asking you to support me and my work for the non-profit Cure JM Foundation
(www.curejm.org (http://www.curejm.org))

Donations may be mailed in using the donation form or may be made online at: http://curejm.donorpages.com/ChicagoHalfMarathon/HelpJordan

Newest Update

Big Announcement!

Journal entry by Denise Rackauskas —

I am happy to announce that Jordan was granted his wish by the wonderful  Make-a-Wish foundation!  Yes, it's exciting news, but it is also bitter sweet.  It is hard to imagine that his life took such a turn a few years ago.  However, on another good note...Jordan's health has greatly improved!  Before Jordan's diagnosis he was playing tackle football and running 5K's.  At the height of his illness he was barely able to walk and/or hold objects in his hands. But, through the help of some great specialists and medications we seem to have his illness under control.  As his health has improved we have also been able to reduce the dosage of meds per day as well as eliminating steroids completely. Although the meds have been life saving...sadly, long term use of these medications can cause some severe side-effects and also unknown damage to his body.  So, it is a fine line between the help and hurt that these strong medications cause.  However, we must enjoy, appreciate and relish in moments of good health!

Jordan continues to run Cross Country and Track for his high school team and although he is a Junior he was not on the Varsity team due to his slower running times.  I am ecstatic that after years of hard work and dedication Jordan has made the Varsity team!  He competed in Districts and ran his 5K in 20:16, a personal record for him. He will now go on to Regionals!!! There is a chance that he may not run in Regionals as there are 2 other runners with slightly better times, but the fact that he was able to push himself physically and mentally to make it to this point is an accomplishment in of itself.  He is proud of himself and so are we!

As for his Wish...here is the story:

As a whole our family has a hectic weekly schedule between work, school, sports and various volunteer duties, so Sunday has always been family day.  One of our favorite activities is to sit and watch one TV show as a family on Sundays.  Our show of choice became the Amazing Race.  (The Amazing Race is a reality television game show in which teams of two people, who have some form of a preexisting personal relationship, in competition with other teams.)  As we watched these teams race around the world we got a glimpse into the beauty of many different countries and would often discuss our wish of future travels.  Although the entire family loved the show,Jordan was so enthralled by it that I made it his birthday theme and hid clues around the neighborhood for he and his friends to race.  It was a wonderful birthday party and as close as I could come to making his wish of travels come true...and it was before his diagnosis.

Almost two years later, Jordan was diagnosed with Juvenile Dermatomyositis and Autoimmune Hepatitis and his life (as we knew it)completely changed.  The athlete we knew was no longer...and the dreams of racing around the world now seemed glim.  We (as parents) raced to find other interests for Jordan to help distract him from what he could no longer do.  Dad worked extra hours to purchase a top oft he line DSLR camera for Jordan to begin a new hobby that did not involve athleticism.  Jordan jumped at the opportunity to learn something new and his love of photography began!  So, when asked to "Make-a-Wish",Jordan wished to photograph the beauty that he had seen on TV through the Amazing Race when the teams had traveled to New Zealand. 

So, we are off to a trip of a lifetime in New Zealand!!!! 

As I write this update I am a mix of emotions.  I am beyond excited for Jordan, grateful for the opportunity, and almost grief stricken again knowing and being reminded that my son has (2) life-threatening, incurable illnesses and that his future is unknown.  But, Jordan is such a fighter that he never gives me time for sorrow as he is always off to his next accomplishment that has my heart bursting with joy!!!

This Thanksgiving the Rackauskas Family will be giving thanks to God, Make-A-Wish Foundation (especially our wish granters Jackie and Mary Ann), our family, our friends, the doctors and nurses, Cure JM Foundation and everyone else that has been there for us on this journey with Jordan.  You are not forgotten and every little bit of help (although it may have seemed small to you), reminds me to stay strong and to keep moving forward.

THANK YOU!!!

P.S.  Jordan will be putting together an album of pics from our trip.




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